Bone Mets Thread
Comments
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I thought I'd chime in to. This interesting xgeva topic.
My MO switched me to every 3 mo too. But then I stopped due to onj concerns. I was concerned about rebound too but he didn't believe it saying I'd strengthened my bones the last 4 yrs. Offered me a dexa scan , I passed.
I was told too that it prevents the cancer progression in the bones. If we just wanted to make bones stronger the prolia dose would be enough. Lotsa luck so far.🙂.
My feeling that they are moving to 6 months is this. This stuff hadn't been around so long in cancer patients living longer. They just don't know. But they do know that the bones don't like it after a while. And since it's the exact same drug as Prolia just a different dose, it makes sense if they can put off Prolia 6 months. If it stays in the system that long and it's half life is how long? Why not. High dose in the beginning , then taper down. They do that with other drugs.
Gailmary
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Yeah I was wondering about the Prolia and why men get that for prostate cancer in 6 month dosages and not three monthly Xgeva like BC ladies. PC may be slower growing perhaps, or less issue with hormone removal and bone density, but Im not so worried about my bone density but side effects and bone fractures. Besides, even with Xgeva I had bone progression in one lesion so who knows. Ive got/had some pretty big lytic lesions in weight bearing areas, so Im willing to risk it for now.
Candy - Ill ask my MO next month about the plan for Xgeva and recent research/thinking. I too get the 15 minute blocks more or less, but with stable there isnt much else to talk about so I like to get in my theoretical questions in the between-scan appointments.
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Candy,
For what it’s worth, I was on monthly Pamidronate (not sure of the trade name) for almost three years when my MO decided to stop. At the time I was experiencing elevated creatinine which can be an issue. That turned out to be due to Verzenio but my MO had no inclination to start me again as he said it remains in your system for years.
I would agree with others that these drugs are now being reassessed in the context of patients living much longer. I know there have been previous discussions about this issue over the last few years and this variability in treatments has been noted before. I don’t know that you will find a definitive answer from the literature as I believe this is currently under investigation so you may need to go with what you are comfortable with. Spacing the treatments out to six months seems perfectly reasonable given the uncertainty but perhaps yourquestion should be focused on whether you should continue after three years or stop altogether.
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I will talk to my MO on Jan 30 and report back what she says. If any of you ask your MO, please report back here. I follow this Thread.
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I don't know if I posted this before, but I started with monthly Zometa infusions timed with my MO visits. At the 2-year mark, I went to quarterly visits and infusions. I still am getting quarterly scans.
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I am still waiting to talk to my doctor later today regarding my MRI results. she saw something in my petscan and sent me for MRI.. the place I went to never again, what I nightmare, will always stay in house at sloan for all test going forward. Ok I was bad and read my first mri results. something about metastatic through the thoracic spine with the made focus on the area around T9 vertebra.. then my lower back and hip.. which I had my sister change my password on my patient portal so I don't read what I don't understand. my question, I had a biopsy 4 years ago on my t9 and came back noncancerous.. first time around went through chemo, radiation, anastrozole, for the breast and nodes. we just switched to faslodex..
can something that was noncancerous come back as cancer...
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justme1964, I don't blame you for being worried. I think we've all been "bad" from time to time when it comes to reading our reports. My experience is that IF the results are bad, my MO or doctor will contact me before the info is posted to my patient portal.
Thinking of you and hoping for good news. Keep us posted.
(((hugs)))
Carol
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Justme, I have the very same dilemma with regard to looking at new reports in my patient portal. This metastatic journey started last September. I had gone to my regular orthopedist for what I thought was a rotator cuff problem. (I lift grandkids a lot). So when I went into the patient portal that night, I was beyond shocked to read they thought cancer was in there along with arthritis, osteoporosis and my torn rotator cuff. So now I often wait to look or wait for a doctor. So I guess you can have more than one problem in the same spot. Actually had my first big 3 month scans this morning and can see its in portal already. Nope, not going there, gonna enjoy the weekend!
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Hey everyone! It's been a long time since I posted. I've been reading as best I can to keep up but I'm just not great at participating some times. I guess it's the introvert in me
I read somewhere around Christmas that some of y'all has some difficulties in you T9 and pain on the right side there. I have had pain in my right flank since I completed treatment for my first bout with BC. I now have a met on my 8th rib, but no one thinks that is causing the pain. Instead, they think the pain is caused by the right-side radiation I got. They think the radiation caught my nerves there and caused damage. I've been getting intercostal nerve blocks off and on since 2019 and they seem to help for a while. Just a thought....0 -
Just an FYI from me, I get Xgeva every 6 weeks and have for 4 years now. I just got my latest scans back and Doc says cancer is still asleep so I'm not messing with my treatment plan since I tolerate it really well.
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BigPeaches- You get Xgeva every 6 weeks? Or did you mean every 6 months?
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Anybody else having issues with their specialty pharmacy? I had to change insurance, so changed pharmacy to Accredo and have had nonstop issues. The latest is they say there is an issue with the authorization (again). Half the time when I call, they transfer me to someone else and the call drops. Exasperated and a little over one week of medicine left. My Dr office is working on it. Again.
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mkestrel - I had a bit of a headache when I first switched from Ibrance to Verzenio but other then that, Accredo has been very good. And when I finally got the Verzenio paperwork figured out, they rushed delivery. I hope your issue is resolved quickly.
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Rk2020 I'm glad you aren't having problems. Hopefully my Dr. Can sort out whatever their problem is. I've called many times and got nowhere. They have horrible reviews on BBB and I was starting to think they're a scam run out of an empty storage unit.
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Candy, I get xgeva every 4 weeks, its been that dose for 4 yrs, I don't have any side effects from it, the only time I have a break is if I need dental work done.
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My MO mentioned A LOT of people were having issues in the past month or so with prescriptions. She didn't give me details, but I wonder if the new year caused issues with renewals/preauthorizations.
I have CVS specialty and one of mine had issues and it took so long that I was worried I wouldn't get the prescription I'm time. Luckily it did end up coming just before I needed to take it.
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Hello, I am now a person who is moving into this group, so I am posting looking for some basic info, tips, etc. In the fall of 2018 I was dx with left breast IDC, 5.5 cm, ER/PR super +, HER-. I went though neo adjuvant chemo, surgery, and radiation. Was done with all of that in the fall of 2019. I'd been chugging along with only Letrozole side effect to deal with until just this past week. I went up to the ER a few days ago due to some sudden shortness of breath, and in the process of looking for all the "usual suspects" for breathlessness they found all sorts of metastases in my ribs and spine. There was nothing wrong with my heart, lungs; no blood clots, heart failure, etc., that they usually look for. Just the mets. They found it all on a chest CT and then ordered an MRI to confirm what they then suspected in the spine, as apparently they usually go together.
I saw the oncologist a couple of days ago and she says there are a lot of drug possibilities depending on what further tests show. I'm supposed to have another chest and abdomen CT and then a full body bone scan, but couldn't schedule it until Feb 14, due to radiology backlog. After getting those results, the onc wants to do a biopsy on (not sure yet) some part of the mets (wants to avoid bone if possible) to make sure it's still ER/PR positive or if it's changed, as that will determine what chemo she wants to use.
Can any of you speak to any of this in regard to what I might expect, should watch out for, be prepared for, etc?
This all happened so very suddenly, like some switch got turned on big time out of nowhere. It seems to have hit hard and fast and I had always thought that if I progressed I would get some sort of warning and gradually worsening symptoms. I wonder sometimes now if I'm going to make it to the Feb 14 scans and subsequent biopsy, much less any treatment that is decided upon, because I just ache so much and have so much more fatigue all of a sudden.
Again, I would really appreciate any comments, suggestions, thoughts, tips, whatever about having bone mets.
Thanks much to all!
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threetree - just wanted to add that I’ve had a bone biopsy on my hip bone and 2 liver biopsies. All three were super easy. And if you are having a hard time waiting until 2/14, you can see if there is another facility near you. The results can still be sent to your doctor. I’ve got several facilities near me where I can get scans.
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nkb - Great to get your message and all the info. Yes, I was wondering what else she would biopsy if it wasn't the bone, and there were no other mets. I've been confused about that. To date no one has said anything about possible spread to anything other than my spine and ribs.
Interesting that you too, were on an AI when this happened. I wonder how many of us there are. I've been aware that it can happen, but surprised at what my be the percentage.
Yes, I think once I have some time to do some mental processing and get the scan results and a plan, I should feel better. It'll just take awhile though, and of course I'm terrified that the scans next month will show something even worse or scarier than what they already found. I'm hangin' in there for now.
Hugs back to you and thanks so very much!
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Hey Divine - What a nice message and good advice. Thanks so much. Interesting about the pain, sometimes it's bad, and sometimes it's hardly there at all, and until now, I always was under the impression that it was sore muscles (maybe it was until now). So far, I don't really take anything, except when it's bad, and then I put a lidocaine patch on my chest (the primary pain area), and maybe take a Tylenol. Aleve can work, and I actually prefer it to Tylenol, but I worry about it being an NSAID and the bleeding problems that can come with those.
Interestingly, a couple of days ago I started to take some fermented wheat germ extract capsules; not because I think it will cure my cancer, but because in so many reviews I've read, they say it is an anti inflammatory and can help with joints, along with generalized body inflammation. Many also talked of improved energy. Well, just this morning, I'm wondering if that isn't helping some. I have much less pain today, and I got a pretty good walk in this morning - something I could not have done yesterday at all. I also think that the brain fog I have from the Letrozole and possible "long Covid" problems might be notably improved also, after taking this fermented wheat germ extract for a couple of days. Even if it's no cure for cancer, I just appreciate the bit more energy and clearer head than I've had. It might be just a fluke, but I'm going to keep trying it for a while and see if things stay a little better with it.
My days aren't too busy right now, and I am trying to wind down the part-time work that I do, and just become "fully retired" (I turned 70 in December and then this happened, so maybe it's time - not what I had planned on, but OK, if that's the way it has to be.)
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Emac877 - Your contribution may be underscoring what others have said, but believe me, it is much appreciated and any and all info is great for me to hear and process.
I did have a bone scan at the time of my initial diagnosis (fall of 2018), so I know a little bit about that one. Don't like needles at all, and don't like the idea of having to be "radioactive" for a few hours either. I do remember that that shot in particular was really not bad at all, so there's at least that. Yes, I will wait to see what the onc says about a plan and then dip into the stage 4 threads in more depth. I'm having to take this very slowly right now, so have pretty much just gotten involved with this one, since I do know it is bone mets.
I am so happy to hear that your current treatment has been good for 3 years. That's so good for you, and very inspiring for me. I've read of some treatments not helping at all or only for a month or two, etc. The onc said there's just no real way to know, as it's all just a very individual thing depending on tumor characteristics, genetics, and individual responses etc., so I guess I'll just have to wait and see.
I really appreciate all the advice and the virtual hug, and am sending one "right back at cha".
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I don't know if this has been suggested but when I get my scans, I try to schedule my bone and CT scans on the same day.
Here how it works: I go in and get the injection for the bone scan and I ask them to leave the IV line in. Then I go over to the CT scan department and get scanned there. They use the same IV line to inject the contrast and then remove the line. Everyone appreciates not having to stick another needle into me. It makes the CT scan go a little faster, and after almost three years of this, it's become a routine. You'll get to know the nurses and techs who do the scans and injections. Don't be afraid to ask the scheduler to schedule your scans back-to-back. For example, I get the bone scan (nuclear medicine) injuection at 8:00 am, the CT scan at 9:00, then back for the bone scan at 11:00 am. I bring my Kindle or some knitting to keep my mind and hands occupied.
(((hugs)))
Carol
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Sunshine, I'm going to ask if they can do that. My things are pretty far apart, so they may refuse. I have the injection at 11, CT at 12:30 and bone scan at 2:30. I'm going to take my sketchbook and try drawing people waiting at the pharmacy. I'll also try to find a book or magazine.
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sunshine, I’ve also been scheduling my CT and bone scans the same way as you for years. The old cancer clinic had a wonderful scheduler who’d ask what days and times you’d be available, then make all the phone calls, chatting with other employees to coordinate the scans together. I had that for ten years (got spoiled), then two years ago during Covid they opened their brand new cancer wing and tossed the chore of scheduling scans onto the patients. So I ended up talking to people who only had schedules on a computer in front of them, weren’t even at the actual hospital but worked from home and had no relationships with anyone in the scan departments. I had to explain each time that I want the scans on the same day and how the timing of them works. Then they have difficulty finding coordinating times within a certain time frame. It’s been a pain in the ass. I’m learning now, tho, to contact my onc’s office and see if one of the nurse’s can work their magic to get scans scheduled on a more timely basis. Within the last two years my first onc retired, so I’ve had to adjust to how the new onc and her staff approach things. What’s the expression? “The only thing constant is change”. Seems to be my experience!
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I just recently called to make an appointment for my CT and bone scan in the middle of February, and they told me they usually always schedule them together on the same day, routinely. I had wondered if they could do both on the same day, since you get the shot for the bone scan, that makes you "radioactive", and then they need to add contrast for the CT too, so I thought it was possible that the two substances would interfere with each other. They said again, that they do these together all the time. They also told me that they only schedule them at 8 am or 10 am. That leaves everyone time to get the shot, the CT, and then finally the bone scan. They didn't have any other options.
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Just an update from here on the Xgeva issue I posed on my last post on here. I was to see my MO today, after scans and before getting Xgeva for this time. I was going to ask her advice on continuing Xgeva,or taking a vacation from it since I have been on it for 5+ years. And also my question about using Xgeva with 6 month dosing schedule. I had to cancel my appointment today due to weather conditions. I had to reschedule my scans for this upcoming Friday, along with my labs and Lupron and Xgeva shots. But cannot see MO until Monday-- to get the scan results and discuss the Xgeva every 6 month dosing. So...I will be getting Xgeva again-- last dose was 6 months ago. I am going to ask my MO about using Xgeva still-- what I should do for the next 6 month dose. I will post what she says after my appointment with her.
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Candy: Good luck with your up incoming scans. Appreciate your follow up re the 6-month Xgeva regimen. I have an appointment with my MO at the end of March. I can bring it up again as well but not sure the MO will have any different answers from the last visit. I receive 6-month PET/CT scans. Not sure if a bone density or bone scan would tell me more about the state of my bones. I really don't want additional imaging. Well, keep us posted. Thanks again.
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I’m scheduled for a CT and bone scan this Friday, only mine arebackwards. I’m drinking the barium and having the CT first, then heading to a different company within walking distance to get the injection for the bone scan. Has anyone ever done it in that order?
Candy, in your pocket for scans. I have mine Friday as well.
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Hi KBL
Just had my scans today and I received the injection for the bone scan first. The needle was left in place and I was taken to the CT scan area (mine were both at the same facility) where the scan IV was attached and my 3 scans completed and the needle removed. I then had about 90 minutes to wait before the bone scan. It's my understanding that there needs to be a 3 hour gap between the injection and the scan so the contrast gets to the bones.
Will be thinking of you and Candy on Friday.
Eleanora
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Thank you, Eleanora. As I’m having the scans in two different places, having the bone scan injection first isn’t an option. I have to drink the barium at 8:00 am.
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